Fibromyalgia Experiences

Update as of 7/99:

In May 1999, I went back to the chronic fatigue clinic and met with Dr. Buchwald herself. She discussed my test results and my treatment thus far and how I'd been feeling physically in the past couple months. The biggest anomaly in my test results was an overactive white blood cell count (meaning a hyperactive immune system). She upped my nortryptaline dose and also put me on an SSRI, explaining that she thought my serotonin levels were screwed up and that that was aggravating my chronic pain. She also wants me to start physical therapy, but she doesn't want me to do it until I have insurance again. She also stressed that I need my daily exercise. Since upping the one med and starting the new one, I have been feeling better still most days. I still have periods of not sleeping well and I feel much worse during them, which ironically serves to remind me that I am feeling much better than before many days. I am still not near "normal" but I am feeling better than I have over the past couple years, and it's a start, especially since there is, as yet, no known cure. I will be looking for more things to help me, if anything else can.

Update as of 8/99:

I had a flare-up again in the second half of last month, but now that I'm back on the proper dosage of my sleep med (which I wasn't on for a couple weeks, due to some snafus with the refill and stuff) and am sleeping better again, it's starting to go away. The past week, I've been doing more exercise every day. Before, I typically just did walking and/or qigong, but now I've been doing more stretching, sit-ups, and other "light" exercise. It has been greatly helping my muscles and my energy levels, believe it or not. I think this is a testament to my system starting to even out some more -- to it getting a little bit more like "average". A fellow person with immune disorders highly recommended the video Callastenics, which also got great reviews when I checked online, so I've ordered it and will report here and/or on my fibro tips page after I try it.

Speaking of recommendations, this week I have begun to take an MSM supplement, at the recommendation of a fellow person with fibromyalgia that read this website and emailed me telling me that it has been a lifesaver for her. She specifically recommended the brand TriMedica's MSM with vitamin C product. My local health store didn't carry it, so I have been trying plain TriMedica MSM supplements taken at the same time as the vitamin C supplement that I had already been taking (Optimum's Hi C-500; in addition to straight C, it has bioflavonoid complex and rutin, all in a base of other stuff that's rich in vitamin C). As with the aforementioned video, I will report on my results and observations on this page and/or the fibro tips page after I've been taking it for a bit longer.

Update as of 11/99:

Well, one of my meds (nortryptaline) started becoming ineffective later in 8/99. The further on time went, the more ineffective it became. At first I was just sleeping increasingly poorly, and then my gastro-intestinal problems came back, and then my migraines started to return. I called the doctor numerous times about this and it took them eons to get back to me (at least 1.5 to 2 weeks, which was just absurd to me). By that time I'd adjusted my meds myself and the physician assistant told me to just keep taking the new adjustment (50 mg per night). I was wholly unimpressed and pretty glad by that point that I was leaving the city and would be able to find a new practitioner where I was moving.

Shortly after I moved the nortryptaline became more and more ineffective, even at the higher dose, and after I had an extreme bout of insomnia one night and only fell asleep after taking a total of 100 mg, the second 50mg at 3:30a.m. (!), I quit taking it altogether. My sleep has been fluctuating since. (I've yet to start another sleep med.)

I've been living in Boston for almost two months now and I've yet to start seeing a new practitioner. I've tried for a long time to get into American WholeHealth but they haven't been very good about scheduling and I'm rather unimpressed. Now I'm hoping to get into Mass. General Hospital's Pain Center; the director there (if he's still director) is supposed to have a good amount of experience with fibromyalgia patients. I also called Dr. Jay Goldstein's Chronic Fatigue Institute just yesterday and left a message asking if there's anyone in the Boston area that follows their methodologies.

I'm hopeful.

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